Diagnosis to now

Sunday, February 15, 2015

Where do I begin! Recent blog saw results not that good and an immediate course of radiation was needed to shrink the 20cm tumour that had pierced thru pleura into stomach creating a very dangerous situation. I survived ... shall I say we survived the 10 days ... 14 day stay, as Keith was with me all the way - living, breathing and having to put up with my highs and lows when various meds would kick in, plus anxiety etc of the situation took its toll on both of us. Trying to stop the nausea and pain was a huge priority and luckily a visit to see Stephen Vaughn part of my oncology team promptly within a few days did this, to the point of taking the meds religiously for a couple of more weeks until the radiation does its magic - a big thank you Stephen for making our life much improved. Both much improved especially the pain management. While there I quickly became very fatigued however was able to in between catch up with a few close family and friends.

We stayed near the Epworth hospital, Richmond in East Melbourne and enjoyed the beautiful surroundings including Fitzroy Gardens when I felt up to a walk. By end of the 2 weeks I was again lol looking for park benches to lie/sit on.

There is no place like home! Charlie (our beautiful siamese cat) was just to happy to have us home - he quickly told us very vocally, then became clingy until he felt comfortable after a few days that we were home to stay.

While we were in the Epworth hospital 2 beautiful and brave warriors were there at various times - Mary Heddles and David Shaw. We met on the Monday morning at the little cafe downstairs in the hospital for a catchup - Lou, Keith, Mary and her husband Martin and Coral Shaw as she had received the good news that David was being released to come home that day after a long stay in the hospital to manage his pain. It is with sad news that I received a message from Coral the next morning to say her beautiful warrior, soulmate and husband passed away that morning. David got his wish to go home - I am so glad that wish was granted. Unfortunately I could not attend his funeral as it was my last day of radiation and both were being held at 1pm. I was there in spirit holding Coral and Catherine's hands. A beautiful picture of Coral and David.
RIP David you truly are a brave warrior xx

Last week saw Keith and myself with an appointment at a holistic funeral parlour in Woodend
called NaturalGrace. They are all over Victoria. Website - NaturalGrace.com.au
We are holistic funeral directors integrating end of life, after death and funeral care.
Authentic, sustainable and beautiful choice offered by compassionate, experienced and gentle professionals.

We both came away from there emotionally drained however at peace and to be able to plan our own funerals our way is such a relief. It does not mean that I am going to die tomorrow, it just now means that we both know exactly when the time comes we will be at peace with the arrangements in place. So we can now place this in a folder and file away! I have chosen a beautiful wicker basket (slightly shaped like a coffin) with rope handles on the side. Notelets attached with string to the basket where everyone can write what they would like to say at the funeral. This will be a keepsake for Keith to look at during his time of grieving.

I am so pleased through my local doctor who had attended one of these services recently at a friend's property (my funeral will be held at our home) and highly recommended the genuine warmth and harmony. Also thanks to my beautiful neighbour who happened to mention this green/environmentally friendly funeral directors when I mentioned my wishes.

To all the beautiful warriors doing it tough around the world - my heart goes out to you. Sending you a rainbow of love, strength and smiles.

Asbestos scourge needs Commonwealth leadership

Australia has one of the highest global rates of asbestos-related diseases and now that the Abbott government has effectively abandoned affected Australians, it's time for the Commonwealth government to step in, writes Lisa Singh.

Time to take action: Asbestos is a national problem and requires a national solution. Photo: CRAIG ABRAHAM

More Australians die each year from asbestos-related diseases than the number of our fellow citizens killed in road accidents.
The fact that Australia is a nation of home renovators, along with our enthusiastic mining and usage of asbestos up until 1990, explains in many ways the shameful situation that Australia has one of the highest global rates of malignant mesothelioma. This rate will keep rising until at least 2020.
Asbestos, highly toxic, very insidious and frustratingly persistent, has already affected thousands of Australians. No one doubts it will affect thousands more.
It was this devastating reality that drove me to co-found the Asbestos Free Tasmania Foundation in 2010 and, along with my colleague Russell Broadbent MP, to establish the Parliamentary Friendship Group on Asbestos Related Diseases (PGARD) as a forum to enable parliamentarians to come together to raise awareness of, and to help prevent the burden of, asbestos-related diseases.

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It is the Commonwealth government's responsibility to help all Australians under the gun of asbestos.
This is a responsibility the Abbott government has not been swift to accept.
As we have seen this year in the ACT and are discovering in NSW, the curse and threat of asbestos is frighteningly real for many families. We have read and heard testimony from families in the ACT who are paying mortgages on houses they will never enter and are frightened for their children who may develop mesothelioma.
All they have been offered by the Abbott government is access to a loan on which the ACT will be required to pay interest. Is it any wonder that ACT citizens feel abandoned by Tony Abbott?
In the meantime NSW families still await their fate.
All of this further demonstrates that the scourge of asbestos is a national problem and therefore requires a national solution.
The Asbestos Safety and Eradication Agency, established by Bill Shorten in 2013 when he was Minister for Employment and Workplace Relations, is a key part of that national solution and critical to delivery of the national strategic plan for asbestos management and awareness.
This is evidenced by the extraordinary success of the First International Conference on Asbestos Awareness and Management in Melbourne in November, which was hosted by the Asbestos Safety and Eradication Agency.
Delegates and stakeholders from across Australia discussed the big issues facing them in raising awareness about the dangers of asbestos in work and domestic environments, and how they can be managed into the future.
But, as was so clearly demonstrated at the conference, the agency still has a lot of work to do in order to bring about the essential change needed at all levels of government. Work that will never be done if the Abbott government abolishes the agency, as the Commission of Audit prescribed.
It is incumbent upon Senator Abetz, my fellow Tasmanian and Tony Abbott's Minister for Employment, to publicly guarantee the protection of the Asbestos Safety and Eradication Agency from the blades of the Commission of Audit, and to make that guarantee soon so the agency can carry on its hard but indispensable work.
Mesothelioma is a cancer which is almost uniquely caused by exposure to asbestos fibres. There has been a particular spike in the number of cases of mesothelioma, an incurable cancer caused by asbestos. This disease is devastating and requires costly medical care.
The rise in the number of Australians being diagnosed with asbestos-related diseases makes any potential funding shortfall extremely concerning. Unfortunately, we have been warned of exactly such a shortfall by the Asbestos Injuries Compensation Fund (AICF).
The AICF was established to ensure James Hardie adequately compensates victims of diseases related to its products. The fund confirmed last year that it could run short of money as soon as 2017.
Quite rightly, asbestos support groups like the Asbestos Diseases Foundation of Australia led by my friend Barry Robson are outraged and confused by this news.
The shortfall is due to the rising number of Australians who are suffering and dying due to James Hardie's asbestos products. Claims in recent years have been higher than expected.
The AICF may seek approval from the Supreme Court to pay victims by instalments to avoid the shortfall.
As Barry Robson has said;"Asbestos victims don't die in installments, they don't lose the ability to work or care for themselves in installments, yet James Hardie wants to see them compensated in that way.
In my opinion it is clear that resolving the shortfall requires James Hardie to accept its clear moral responsibilities by paying into the fund amounts that more closely match asbestos claims.
To quote Barry Robson again:"If James Hardie can find half a billion dollars to hand over to shareholders, and $11 million a year just for their CEO, surely they have an obligation to ensure every victim of their deadly asbestos products is properly compensated."
However, if James Hardie is found shirking, then it seems likely that the AICF will call upon the loan agreement with the NSW and Australian governments to top up the amount of funds available to ensure victims are compensated in full.
Once again, the onus lies squarely upon the shoulders of Senator Abetz. On behalf of the Abbott government, he must step up and give the many present and future sufferers of asbestos related diseases the modicum of assurance it is within his power to provide.
He must immediately reassure sufferers – who will be absolutely dependent on insurance payments to help them and their families deal with their disease – by confirming that the Abbott government is prepared to release the loan monies if, as and when necessary to ensure that all claimants are guaranteed the financial support they will need when they need it.Lisa Singh is a Labor Senator for Tasmania and co-chair of the Parliamentary Group on Asbestos Related Diseases.